Lou15
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Lou15, August 7,  2019  8:48pm EST

Need support

This is not first time I’ve experienced symptoms of Afib, but it’s first diagnosis and it appears to be here on a permanent basis.

my cardiologist sent me away with beta blockers and basically good luck. Even though I’m taking beta blockers I’m getting breathless easily , dizzy and feeling nauseous when even mild episode comes on and my heart rate is not high. 

I feel like my life is on hold and overnight it has changed. I don’t know what to do as I have really been no information and barely a diagnosis. 

is there  any advice I could get in regards to this as I cannot live in stalemate and all drs seem aloof about it. 

What should my next step be as I don’t feel even well enough to go back to work because of my persistent daily symptoms 

8 Replies
  • lmaj
    lmaj, August 7,  2019  10:14pm EST

    Hello Lou.  Run don’t walk to a reputable electrophysiologist (EP) a cardiologist that specializes in irregular heart beats.  I recommend finding one at a large university hospital with a lab specializing in ablations. Find an EP that has done many because the ablation is only as good as the person that performs it.  You can ask this group for recommendations by providing us with your location.   

    The dr might not go straight to ablation but could try anti-arrhythmic meds first and then go from there.  

    I would also change cardiologists — they should have prescribed a blood thinner straight a way and provide recommendations to an EP  giving you a beta blocker sending you off with a good luck to me is mal practice  

    do your research on this site and google — you have to educate yourself.  But look at reputable sites — Cleveland clinic   Mayo Clinic for starters   

    Let is know how you progress  

    Linda 

     

  • Lou15
    Lou15, August 8,  2019  6:51am EST

    I live in Australia, I’m not sure where to go as I live in the country. Should I get another referral? He only had Holter monitor on me for 24 hours and it picked nothing up as I did not have an episode but have had a few since and I don’t know what to do? I’m lost and scared .

  • Thumper2
    Thumper2, August 8,  2019  8:21am EST

    Lou15,  Linda has nicely summarized the kinds of things you need to work on.  Living in the country is not the easiest situation, but you could do a lot on your computer.  For example, google Australian universities and/or large hospitals to see if they have cardiac units.  If they do, see if such units have electrophysiologists on their staff.  Telephone the cardiac units to see if any of those EPs do a lot of ablations successfully.   If so, a referral visit to that EP would be worthwhile, if you can manage it.  I agree with Linda, you should be on a blood thinner.

    As for self-education, this is important, so you can learn AFib vocabulary and processes.  As Linda advises, go online to the Cleveland Clinic and the Mayo Clinic and look up all you can about Afib.  Also, go to the StopAfib.org site  -- there is lots of free information there, given by some of the world's most reputable EPs who specialize in AFib.  Look there for free streaming of the 2018 national conference on AFib, "Get in Rhythm, Stay in Rhythm,"  The 2019 annual national conference by that name is just starting in Texas (it can be watched live, but there is a fee for that).

    Is there anyone else from Australia on this site who could recommend a reputable EP?   

    Lou, keep us posted.  Ask any more questions you may have.

    All the best, Thumper2 (Judy)

  • BethClark
    BethClark, August 8,  2019  8:58am EST

    Sorry that you've joined us in this journey. Getting this diagnosis is scary. But it is very possible to live a very normal life with aFib. Typically it takes some trial and error to figure out what treatment works for you. It sounds like the medication you've been prescribed so far is not working. Most of us are on blood thinners to help prevent a stroke as the risk of a stroke when you have aFib is significantly higher than the normal population. There is something called a CHADs score that doctors use to determine risk for stroke and whether you should be on a blood thinner. For me being over 65 and female brought me to a CHADs score of 2, so a blood thinner was prescribed.

    For the last 4+ years I've been on medication to control aFib. That is usually the treatment method that the doctors try first. I started with metoprolol, a beta blocker. Flecanide, an antiarrithmic,  was added after my second aFib episode 4 months later. The combination of a beta blocker and antiarrithmic is working well for me. I've had no episodes for over 4 years now. Some people tolerate certain medications well. Others have horrible side effects with the same medication. Certain medications work well for some people and do not work at all for others. You need to work with your doctor to come up with what works for you.

    For some people medication doesn't work well for them or they don't want to be on medication. So they go through a procedure called an ablation, which is done by an electrophysiologist (EP), who is a specialist in heart rhythm disorders. Medication has been working for me so I have not considered an ablation, which is a procedure in which the EP goes in and zaps the area of your heart where the electrical impulses are going awry. Some people find that procedure to be quite helpful, although it might take more than one ablation for success. You'll be able to find a lot of postings in this forum from people who have had ablations.

    As Imaj says, the EPs are the specialists in heart rhythm disorders. You should be looking for an EP to treat you for this condition. Living out in the country would pose some challenges finding an EP I'm sure. But you'll want to have a doctor who is a specialist in your condition. That would be an EP. If you get to the point where an ablation is recommended, make sure you find an EP who has done a lot of ablations to do the procedure. The way my medical plan works is that they use the speciallists (EP) for initial diagnosis and then have the cardiologists be the main contact as long as things are going okay. I was evaluated and treated by the EPs initially when I was hospitalized after the first episode. A cardiologist (who is quite good) is my main contact doctor for the aFib as long as everything is stable. If there are any issues then I'd go back to the EP clinic.

    It is very common to be scared, anxious, and discouraged when you get this diagnosis. The more you learn about this condition, the less anxious you'll be about it and the more confident you'll be that you can live a pretty normal life with it. It takes time to get to that point. Keep reading this forum. I've learned a lot more from this forum than I did from my doctor (who is excellent but busy). Plus you'll get a lot of support.

    As you read posts you'll see that a large majority of us go through some pretty severe anxiety about this condition for a while after we're first diagnosed. Learning about this condition helps with that, as I mentioned. Some people find that meditation, yoga, and the like also help with the anxiety. It's also important to work out a plan with your doctor for what to do when an aFib episode occurs. I am highly symptomatic when I have an episode (very high heart rate, feeling faint and overall terrible). My doctor told me to go to the ER, although said it's not a life threatening emergency so I didn't need to rush in. Some doctors tell their patients to take an additional pill. The point is that if you know what you should do if you have an episode, that should help your anxiety about it. You'd just execute your plan if an episode happens. For me it's necessary to go to the ER to have them stop the episode. For some people taking additional medication will stop it.

  • Jrincleve
    Jrincleve, August 8,  2019  9:09am EST

    It took me a few weeks to adjust to the beta blockers.  My heart rate and blood pressure was always crazy low which also made me light headed and no energy.

    I am 4 months into the beta blockers and don't feel normal but close.

  • Lou15
    Lou15, August 9,  2019  12:41am EST

    My dr had me on about 100 mg of propranolol and I was feeling really sick and breathless on it with low blood pressure, I’m now just taking 10 mg twice a day and not feeling as sick but I’m definitely not right even without high heart. Rate I’m not feeling good , I feel small episodes come on most days and then get really tired. I can go from feeling ok to feeling like crap. Can anyone relate?

  • mdlagas
    mdlagas, August 9,  2019  8:46am EST

    I went through an experience with my cardiologist that I wouldn't wish off on anyone.  I actually only saw him once during the 6 months that I was in and out and finally permanently in AFIB.  Every other visit he sent in his practitioner who just kept telling me that I had to learn to deal with it.  The only meds I was placed on were beta blockers to keep my heart rate from racing.  Finally I scheduled and appointment with an Electrophysiologist on my own (Thank God my insurance allowed that).  On my first visit he explained what was going on and what various treatments could be done, expressed surprise that I had not been put on an anticoagulant and prescribed Xarelto for that and Flecainide for rhythm control.  Fortunately for me, the Flecainide stopped the AFIB episodes and have kept them under control (only 1 or 2 incidents since).  That was over 3 years ago.  In that I have been lucky as you can see by the experiences others have written about in the forum.  I am 100% in agreement with Imaj and BethClark about getting to an EP as soon as possible.  Just the information that a good EP can give you will lessen the anxiety that accompanies the AFIB diagnosis.  What treatments options you can do and what will work for you will most likely be different than for anyone else but that is step one on the road to living a normal life with an AFIB diagnosis.

  • katie520
    katie520, August 9,  2019  9:37am EST

    Lou, I don't know if this is an option, but Dr. Prash Sanders is an EP at the University of Adelaide has been a speaker at the StopAfib conventions, and I actually wish we had a clinic like his close to me.  If not, maybe googling their site will bring up other leads that will be useful.  It sounds like you at least need to get a second opinion.  Linda really covered it well.  It's a real learning process, and I'm still learning myself!    

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